Brain Tumour Research Funding

Hilary Benn Excerpts

Thursday 9th March 2023 Commons Chamber

[Hilary Benn (Leeds Central) (Lab)]

The reason that I rise to participate in this debate is that just under two years ago a constituent wrote to me. He revealed that he had a brain tumour and asked me to go along to an APPG meeting to discuss ways in which we could try to find a cure. I went along and I must confess that little did I know then that I would end up taking part in the inquiry. We had, I think, six evidence sessions and we heard from a lot of people. The report, which the hon. Member for St Ives (Derek Thomas) referred to, distils into its recommendations what we heard from those who contributed and who were very patient in answering the many questions that we put to them.

I pay tribute to the hon. Member, who chairs the APPG and who chaired the inquiry. He has done so brilliantly, cheerfully and in a way that has brought out the best from all of the people who appeared before us, who came along to let us draw on their expertise, to share their frustrations and to offer their ideas and suggestions. It has been an honour and a privilege to work with him and all the other hon. Members here who took part. I also thank the wonderful secretariat from Brain Tumour Research for supporting us in our work and for pulling the report together so skilfully.

A cancer diagnosis is a terrible thing, although statistics tell us that one in two of us will receive such a diagnosis during our lifetime. I think most of us, if we are honest, would say that we wince when we hear the word “cancer”, because all too often it conjures the idea of a downward path to the end of our lives. Any of us who has been through that experience, either ourselves or, in my case, with those we love, knows exactly how that feels, but death is not always the outcome. Our lives are not preordained, and we have seen real advances in the treatment of certain types of cancer in recent years—breast cancer is a good example—and, overall, I am advised that cancer survival rates in the UK have doubled in the last 40 years.

But when it comes to brain tumours, the blunt truth is that there has been almost no progress at all. The five-year survival rate for glioblastoma, the most aggressive form, is 6.8%, and the average length of survival is between 12 and 18 months.

[Siobhain McDonagh (Mitcham and Morden) (Lab)]

My right hon. Friend refers to the average length of survival as being 18 months. Actually, it is nine months. His figure suggests that everybody completes treatment. Nine months is the life expectancy of somebody diagnosed with glioblastoma.

[Hilary Benn]

I absolutely take my hon. Friend’s point, which reinforces, in all of us, our awareness of just how awful this diagnosis is, and it is the answer to the question that every person who receives such a diagnosis asks their doctor: “How long have I got?” Eight or nine months is no time at all.

Dr Matt Williams, a clinical oncologist, is quoted in the report:

“Every week I have to tell patients that there is nothing more we can offer. I have now been a consultant for 10 years and these conversations are the same now as when I started.”

That is why a brain tumour is a devastating diagnosis. A patient quoted in the report says:

“It’s devastating and living with a time bomb in your head.”

That is a very good description of what it must feel like. In those circumstances, what do patients and loved ones want? What we would all want is to make sure that we are doing everything we possibly can to try to change that.

[Mr Carmichael]

I speak about this publicly from time to time, and I am always struck by the number of people who say to me, “Thank you for doing that, because this took my father”—or their brother, their neighbour, their friend or whoever—“and I had no idea that this had been their life experience.” When I was growing up, 40 or 50 years ago, a cancer diagnosis really was not talked about—it was almost taboo—and I think we are in the same place with brain cancers. If we are to make the progress we need, we all have to start talking about this much more. The experience has to be shared.

[Hilary Benn]

I agree completely with what the right hon. Gentleman has said. To borrow a phrase, it’s good to talk about brain cancer. That is why we are here in this Chamber today. We are here to raise awareness, because loved ones dying remains, among some people, a great taboo, about which we are fearful of saying anything. When my late first wife died of cancer at the age of 26, I was struck by the fact that my colleagues at work, though wonderful people, found it almost impossible to mention what had happened when I went back to work. I understand why, because before it happened to me I would have been like them. I would have thought I would say the wrong thing or cause someone to break down in tears. When it happens to you, you come to realise that there is nothing special to say; you just have to go up to the person and say, “How are you?” and listen. Yes, they will cry and you will cry, but that is so much better than people hiding it inside, with the suffering that it brings.

That is what this report is trying to do—it is trying to make sure that we are doing everything we can. There are good reasons why brain cancer is proving so difficult to treat. I learnt about that, as did the other members of the inquiry panel. The brain is a complex organ. I had never heard of the blood-brain barrier before. I am not sure I still understand it, but I heard a lot about it in the evidence we received. We learnt about treatments that had been tried and had failed, and about the desperation of those with brain tumours to get on to trials that might just offer some hope, not of a cure, but of a few more months. For someone who has received a diagnosis of a brain tumour, every second—let alone every minute, week or month—is extremely precious. We heard of the despair of people who are unable to get this for themselves or their loved ones, and it is so particularly poignant when it is children who have a brain tumour.

So we are calling for a renewed and determined focus on doing every single thing we can to change the situation, not because we are naive about the difficulties, which are many, but because it is the very least we can do for the people who find themselves in this position. So, of course, we have called for greater investment. I thought the hon. Member for St Ives explained well why the funds that have been made available and set aside for brain tumour research—I welcome them enormously—have not all been allocated and spent. It is not for want of willingness; it relates to the point he made about the lack of suitable research proposals coming forward and the frustration, which came across so clearly in that one evidence session in particular, of those who have put their research proposals to the research bodies, have been knocked back and feel, “They did not really understand what we are trying to do.” That is because those who sit on those panels may not have expertise in the field of brain tumour research, which is why we strongly encourage the research councils to look more widely at, and more favourably upon, proposals for brain tumour research.

We have a funding system that has been built in silos. It needs to be better joined up, from basic science through to clinical trials. At this point, I wish to pay tribute, as we all would, to the clinicians, scientists, doctors and others who work their socks off to try to crack this problem and find a treatment. That is why we have made some very specific recommendations. The example of biobanking and tissue samples seemed so simple when people talked about it. When we are dealing with any disease, but particularly this one, does it not make sense to pool all of the information that we have available about what we have learnt, what we still do not know, what may work and what may not? Clearly, that is not happening, even though it is a simple thing to do so that anyone undertaking research can draw upon all the available material as they apply their mind, scientific skill and determination to finding a cure.

We are also calling for patients with brain tumours to have equity of access to trials of new anti-cancer drugs that currently may be available only to patients with other types of malignant cancers. There can be a fear that if other people are brought into the trial, it will somehow skew the result. However, if a person is dying, that is not their concern. Their concern is: “Might this possibly work to save my life or the life of the person I love?”

I hope that this report and the views of all those people who so generously gave their time—we thank all of them—will have an impact as, collectively, we roll up our sleeves, redouble our efforts, and express an even greater determination to find treatments and cures for this cruel disease that shortens the lives of so many people whom we have come to know or know already and love. What keeps us going in difficult times is hope, and I think these recommendations offer exactly that. As one patient said, “If you have hope, you have life.”

--- Later in debate ---

[Will Quince]

I will specifically address brain tumour research, but clinical trials are taking place in acute trusts across the country. There are fewer clinical trials in this area than I would want, and I will explain why a little later. Finally, I pass on my very best wishes to Margaret.

My hon. Friend the Member for Buckingham (Greg Smith) urges us to act on the report’s recommendations, and he is right to do so. I will look at those recommendations very carefully. He touched on the £40 million, and I will come on to that a little later. He also mentioned childhood brain tumours. There is insufficient time to go into the level of detail I would want to on that subject, and I would be happy to meet him and members of the all-party group to discuss what more we can do on childhood brain tumours and the treatment thereof.

The right hon. Member for Hayes and Harlington talked about the courage and fortitude of families. He shared Sonya’s experience and talked about the importance of support for loved ones, and I will raise those issues with my counterparts at the Department for Work and Pensions. My hon. Friend the Member for Meon Valley (Mrs Drummond) shared the impact on the Fearn family, which outlines why it is so important that we get this right. She touched on the importance of awareness, and how in this area there is a high prevalence of late presentation and late diagnosis, and the impact that has on prognosis.

The hon. Member for Luton North (Sarah Owen) told Amani’s story and how the family had to fundraise to travel to take part in an international clinical trial. Of course, I send my condolences to Amani’s family, and I would be happy to meet Khuram and Yasmin to discuss this further. The hon. Lady asked where the money allocated is. It sits within NIHR and remains there; funding is allocated and it awaits suitable, fundable applications, so that is where we need to focus our efforts.

My hon. Friend the Member for Great Grimsby (Lia Nici) rightly praised the work of the all-party group, which probably makes this the right time to turn to the report, “Pathway to a Cure”. I very much welcome the group’s investigation and report. I acknowledge the problems and issues that have been identified. Let me be clear: we want to fund more high-quality research to accelerate the field and help patients. The report makes a number of recommendations for actions by research funding agencies, such as the MRC and NIHR, on co-ordinating action and making funding available. Crucially, the report is clear that to make advances in brain tumour research we must bring together diverse disciplines. There are detailed recommendations here, with potentially far-reaching consequences, and the MRC, NIHR and I will consider responses and come back to colleagues.

Members from across the House will understand that this debate is not necessarily the place for a detailed response to the report and every recommendation. Notwithstanding the strong case made today on the importance of research, we have to tread carefully. This is not the first condition into which I have probed and asked lots of questions about why we have not been funding all the research, and why funding is sitting unallocated, given the bids that have come in. We have to tread carefully because the clinicians and scientists rightly push back, saying that lowering the scientific quality bar for access to scarce public research funds, which would not be won in open competition, is unlikely ultimately to be a good solution. We must get this right, and at the heart of that is ensuring that we support applicants to make high-quality bids, which will then translate into funding awards. Of course, we want to fund the best science to help patients and ensure that our country remains at the forefront of scientific progress.

All Members, from across the House, rightly mentioned the crucial importance of research in tackling cancer. A theme of the report and the debate has been that of co-ordinating action along the translational pathway; that starts with the fundamental science and early translation, typically supported by the MRC, and goes through to the applied health and care research, which is funded by the NIHR. Working with the NIHR, the MRC has developed guidance and toolkits for teams to help them to navigate the scheme that is best suited to their proposal. However, I have heard today that we are not giving the right support to those making applications, and where applications are rejected we need to look into that further.

[Hilary Benn]

I am listening carefully to the Minister. What does he say to the argument that we heard during the inquiry that the people who sit in judgment, quite properly, on bids might not have a sufficient degree of expertise in this area to be able to judge whether the research proposals are suitable to be funded? I do not expect an answer now, but will he undertake to go away and look at that point?

[Will Quince]

I thank the right hon. Gentleman for his question, and I shall try my best to answer it. It is a question that I listened to very carefully when he posed it in his contribution, and it is one that I have posed myself when looking at the NIHR and what it does. The committees for NIHR and the programmes that come forward receive a diverse range of applications, which is understandable. Their make-up, therefore, is that of a broad range of expertise. As I said a few moments ago, they may or may not contain experts in the field of brain tumour research. However, having said that, the NIHR committees then use peer review from appropriate experts, which would include brain tumour expertise as relevant to the brain tumour proposal that is under review in each individual case. That is there deliberately to inform their decision-making. They co-opt particular expertise on to the committee, which is an option always available to NIHR if the committee needs that particular input. If clinicians and scientists are telling the right hon. Gentleman that that is not happening, or is not happening to the degree that we would want and expect it to, I would want to take that away and look at that further.

I wish to come back to a comment that the right hon. Gentleman made about brain tumours and why they remain a challenging area for research. There is the complexity of the brain itself as an organ, and the way that perception, memory, and emotion— everything the brain does—can be affected differently by different types of tumour. Brain tumours are different diseases that can differ in terms of histology, molecular characteristics, and clinical behaviour, meaning that many different treatments must be developed. Brain tissue is precious and obtaining it for research purposes can be difficult. Obtaining biopsy samples is risky and invasive, and animal models are of limited applicability. Additionally, the community of active clinical researchers is relatively small—it is certainly small in relation to the scale of need. This all makes research on brain tumours challenging, as has been well articulated today, and progress, if we are to make it—and I am determined that we will—requires a collaborative effort between researchers, clinicians, and funding agencies.

How do we grow the field of brain tumour research? This was a challenge from the shadow Minister. We have been taking action to grow the field by supporting researchers to submit high-quality research bid proposals. That has been supported by working with the Tessa Jowell Brain Cancer Mission, which hosts workshops for researchers, and provides research training specifically for clinicians.

Since the initial Government announcement of £40 million over five years ago, we have spent £33.9 million on brain cancer research across Government. I am conscious that there is a difference in the two figures, but that is because we are combining spending from UK Research and Innovation with the spending of NIHR. However, as I have made clear already, we want to spend more and the NIHR welcomes funding applications for research into brain tumours, and the Department of Health and Social Care priority call on brain tumours remains open. Critically, all applications that have been assessed as “fundable” in open competition have been funded, and that will continue.

As I have said, brain tumour research is one of the most difficult scientific challenges of our age. We need to invest across the translational pipeline, from fundamental science through to effective treatments. These are long-term challenges and we are committed to them for the long term. To be clear, the £40 million announcement was a signal to the research community that we are serious about funding research in this space. It is not a ceiling. If we can spend more on the best quality science, let me assure the House that we will do so. I understand and share the frustrations that only a proportion of the £40 million on brain tumour research has been allocated so far, but this funding will remain available. I genuinely believe that the funding for brain tumour research is promising and we look forward to considering the all-party group recommendations with colleagues across Government. I am confident that the Government’s continued commitment to funding will help us make progress towards effective treatment.